Carers' Experiences

Most care for people with dementia is provided by family and friends -‘carers'. It is estimated that the UK has 670,000 primary carers of people with dementia, and these carers save the UK £8 billion a year (Alzheimer's Society 2012).

Here some of our members share their stories and experiences of looking after a loved-one with Dementia.

Kate Harwood's StoryKate Harwood

Kate joined Uniting Carers in 2009. As a former teacher and campaigner for equality and social justice she is now passionate to raise awareness about dementia and the vital role of family carers.

She is actively involved in all strands of Uniting Carers from participating in research opportunities through to involvement in the implementation of the Dementia Strategy, both locally in Camden and nationally. Kate is also a formidable speaker and advocate for the provision of Admiral Nurse services.

‘I cannot thank Uniting Carers enough for the encouragement, training and the chance to meet others coping with dementia. I have been empowered in a way that I couldn't have imagined. Seven years ago, I would have been unable to speak at a large conference of 500 people, in front of professionals from all areas of dementia support.'

Kate shares her experiences here.

John Sprange's Story

John Sprange

Uniting Carers member John Sprange often speaks to professionals and the media about his experiences of caring for his father who has dementia. Read John's story here.



Uniting Carers members speak out at 5th Dementia Congress

Helen Taylor, who cares for her husband, and Manjit Nijjar, who cares for her father, opened the 5th Dementia Congress in Bournemouth and shared their experiences of caring for a loved one with dementia to a packed audience.

Both Helen and Manji have received training from Uniting Carers at Dementia UK to enable them to speak out about their experiences and to help others in similar situations.

Helen Taylor's Story

Helen Taylor's Story 


  Read Helen's Story here about caring for her husband Geoff.



Manjit Nijjar's Story
Manjit and her father



Manjit shares her experience, as an Asian in the Asian community, of looking after her father.




Jean Tottie's Story
Jean is a former carer and Chair of Uniting Carers. Although she is an expert in the care of older people, with 35 years working in health and social care, she describes her frustration and anger at the obstacles put in her way and how hard it was to get the help and support she needed for her late father.

Pete Watson's Story
Peter's wife was diagnosed with Vascular Dementia in 2006 at the age of 59. Peter is very keen to raise public and "professional" awareness of the challenges of caring for someone with dementia and was recently elected as the family carer representative on the new Dementia Action Alliance Board.

Daphne Zackon's Story
Daphne cared for her husband who was diagnosed with Vascular Dementia for 16 years. She is an active member of Uniting Carers, has spoken on many Dementia UK training courses and was part of the steering group contributing to the Skills for Care publication 'Dementia: Workers and Carers Together'

Michele Poole's Story
Michele cares for her mother who was diagnosed with Vascular Dementia in 2004

Jim Swift's Story
Jim's wife was diagnosed with Alzheimer`s in 2002. He has campaigned for an increase in Admiral Nurse services and to raise awareness of the support needs of carers doing their best in an often stressful and challenging situation.

Brian Hill's Story
In 2000, after 40 years of marriage, Brian's wife, Jean, was diagnosed with dementia. Brian gave up his post of part-time lecturer at Christ Church College to look after Jean. Jean died at home in October 2008.

Brian joined Uniting Carers, Dementia UK and is passionate about using his knowledge gained to raise awareness of the reality of caring, and to influence professionals to improve understanding of dementia and the role carers play.


Telling Tales about Dementia

Telling Tales about Dementia front cover

Lucy Whitman, a member of Uniting Carers, a writer and former carer, has compiled an anthology of personal accounts by 30 carers from a variety of backgrounds. The result is the moving book: Telling Tales about Dementia: Experiences of Caring, which features a number of contributions from members of Uniting Carers. It is published by Jessica Kingsley Publishers.

Dementia UK is delighted to be involved in this publication. Barbara Stephens, Chief Executive says,

"Telling tales about dementia reveals the true impact of dementia on people's lives. The stories told here are both moving and inspiring. They vividly reflect the tragedy of dementia, the gravity of loss and the complexity of the journey. But there is hope and optimism too."

John Suchet, Honorary President of Dementia UK:

"These personal accounts by family carers, harrowing, distressing, but also inspiring and uplifting, will have you weeping one moment and laughing the next, as they describe struggling to manage situations that range from horrific to comical. The single most valuable achievement of this book is to tell carers they are not alone. The more of us there are, the stronger we become, and the better we can fight for our loved ones in the face of this cruel disease."

Lucy's book is now available to purchase through Dementia UK at £12.99. If you wish to purchase a copy please call 020 7874 7203. All sales through Dementia UK will benefit the charity.


Copyright (c) Dementia UK 2014, Charity Registration Number: 1039404

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